Hi there, Shelley from New Zealand. Welcome to the community!

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@Shelley

Hi there, Shelley

My name is Danielle and I am a Ben’s Friends intern. I wanted to take a moment to welcome you to Sjogren’s Syndrome Support. We are happy to have you here!

It sounds like you are hoping to support your mother that has been diagnosed with Sjogren’s. This is so good of you. I hope we can provide you both with the support that you deserve. When was your mother diagnosed? How is she managing overall?

You might find it helpful to click the search icon (magnifying glass, top right). This is what I use to browse through existing topics. Please do not hesitate to create your own discussion posts as well by clicking the + New Topic tab. This is a great way to connect with others and share your story.

Hope to hear from you soon,

Danielle

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Thanks for making contact Danielle!

My mum was diagnosed about 18 months ago and at first it didn’t seem to have much of an impact however it has progressively become quite severe. She is 75 years old and lives in a different country from me which complicates things as I feel if I was at home I could help more. In particular with doctor’s appointments as I feel that she doesn’t have a coordinated approach. In general it feels like a lot is put down to her ‘old age’. She has lost about 20 kilos over the last year resulting in a weight of only 45 kilos which I feel impacts negatively on her body trying to cope with all the other symptoms.

As with all that I have read with Sjogren’s she has problems with her eye’s (the drops seem to be helping but takes a lot of extra time in the mornings) the mouth and the resulting issues (temperature, taste, lack of saliva) appear to have had the biggest impact (i.e. the weight loss). She has tried the mouth wash but this was unsuccessful, she doesn’t want to take medication as the side effects of nausea when she is already so unwell is putting her off. She has diarrhea also so that makes choosing what to eat a problem.

Other diagnosis are Reynards (also autoimmune) and oestoe arthritis ( previous to the SS) although I wonder if they have misdiagnosed this and it may be rheumatoid arthritis, balance and brain fog issues.

It just feels like she is being attacked from all sides and it has been hard to see her deteriorate so quickly. My dad has been brilliant and patient (every meal time is fraught with tension and anxiety) but we can’t get our head around whether this will be a slow decline to death or whether she will have to live out her remaining years in constant pain and struggle.

Sorry to vent, but until now I have found no one else to talk to. As we live in different countries (her in Australia, me in New Zealand) I have only just visited her and although she had told me what was happening by phone, the full force of the impact was not apparent to me until I saw her and lived with what she is going through, hence this prompted me to find out more information and look for avenues of support for both her and I. I don’t want to add to anymore stress for her so want to know what the best way to help her is.

I have started by stopping all suggestions of what she should try to eat, this seems to make her anxious and stressed, I had a frank conversation with her in regards to asking what she needs and she told me trying to ‘fix/help’ is not what she wants and only adds to the pressure.

I am so glad to have found Ben’s Friends and I have already had a good look at existing topics. At this stage I am reluctant to create my own discussion posts as I feel that I would be ‘talking out of turn’ about my mum as it is her private health issues. She is not so computer/tech literate, so I have told her that I have joined support groups and will keep her updated on any new/effective ideas and she seems happy with that.

Thanks once again for making it not feel so isolating:)

Cheers

Shelley

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Hey Shelley,
Welcome to Ben’s Friends. My name is Merl, I’m a member of the Moderator Support Team here on the Ben’s Friends Network. I’m a (former) Kiwi, now living in Oz. In fact I was brought up in a little town 1/2 way between Dunedin and Invercargill. Prior to my own health issues I worked for 15+yrs in community services here in Australia, often assisting people to access services they required to continue living independently in the community. So I know the systems and how they work.

I think it’s a brilliant thing that you are trying to educate yourself in how best to assist your mother and coming here, asking questions of other people on this journey is a fantastic way to do it. The best people to ask are those on a similar journey and you’ll certainly find them here. Please, please DO NOT be apologizing for venting. We all need to vent or we build up with pressure and explode. Often when dealing with a rare condition trying to find a safe and understanding place to vent can be VERY difficult. We understand this fact all too well.

Now, here in Australia we have state governments and Federal Government. The federal govt have a health dept, but there are many health services funded via the state govts too. If your mother is open to having assistance then there certainly are services which she can access on both a state and federal level if you know where to find them AND how to access them. Being that she is 75 there are many in-home services available too via what is known as an ‘aged care package’. They often come to the home and make an assessment on how best to meet the specific needs for each individual client. They can also assist with medical appointments too if that’s needed. So the services are tailored to that person rather than having a ‘One size fits all’ type service.

I am very pleased that you are obtaining information, then consulting your mother on which direction she wishes to go. This is showing a high level of respect for your Mum, so well done you. Now, along the same lines, I know and have had the ‘joy’ of dealing with many services here in Oz. If you would like (and your mother is willing) I am offering to investigate specific service options, in your Mum’s specific area, then feed that information back to you for you and your Mum’s perusal. There is no pressure here, no strings attached, nothing. Just an offer of assistance from one person with a rare condition to another.

Merl from the Moderator Support Team

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Merl,

What a wonderful way to start my day, opening such a supportive, informative and inspiring email! Thank you so much. It is also Mum’s 75th birthday today so it feels fortuitous:) I am based in Wellington and my mum is based in Belmont, Geelong, Victoria (I grew up there also). I would love to receive any and all information in regards to specific services in Mum’s area. An individual and integrated personal service sounds like magic! I have a 14 year old son with Down Syndrome and so have spent all of those years dealing with hospitals/departments/services and totally understand and appreciate how wonderful it is to find things that meet the needs of our most vulnerable and would so like to be able to help my mum with this so thank you very much for extending the offer of help.

The only thing to consider is that Mum is a pensioner and does not have any private health cover and I know that this sometimes affects level of access and care now in Australia so hoping that she is still able to access something that can help her:) She also considers herself a private person so I will walk gently with what he wants:)

I will pass on what we have discussed when I call her today for her birthday and look forward to hearing from you again!

Many thanks

Shelley

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Hey Shelley,
Just to let you know, there is no problem with regard to health cover. It’s all covered by the Federal Govt via Medicare and due to her age, most health insurance cuts out at 65 or the premiums after 65 are so exorbitant you’ve got to be a millionaire to afford it.
As I mentioned I worked in community services, primarily Disability, covering everything from intellectual, physical, brain injury and sensory. 99.9% of my clients were pensioners and had no private cover. Due to the lack of available nursing home placements the government have a huge network of in-home supports fully funded to try and reduce the pressure on the nursing home system. Part of the theory is that people do much better within their home environment, so let’s support them with in that environment.

Geelong is considered to be a metropolitan area of Victoria and I can guarantee you that there are such services available. But, so as not to offend you or your Mum or point you in the wrong direction, I’ll make some enquiries on firstly getting an age care assessment done, then let you know the steps. The assessment is again covered bt Medicare. It will then be up to you and Mum to decide from there if this is the route you may want to take (or not). Would that be OK?

You mentioned earlier in regard to differing dr’s diagnosis and for people with complex needs and rare conditions, this is not unusual. Personally, I have had more diagnosis than I can count on my fingers (AND toes). Often it can be easier for an overloaded dr to say things like “Ohh you have a diagnosis of ‘X’, your symptoms must be related to ‘X’…” and they don’t look any further.

Here we have General practitioners(G.P.) in basic terms they are your family doctor. Can be great for your general health needs, but not much else. They refer people on to specialists and that’s great if they can pinpoint the primary issue. The problem is that sometimes a more thorough investigation is required to pinpoint THAT specific issue and this is where a physician can help. Again, in real basic terms, a physician is an investigator and have the time to run test, get scans, make referrals, receive reports, etc and co ordinate the whole picture. This, depending on the physician, can have a fee, but again via Medicare a GP can setup what’s called a Healthcare Plan, (which if she hasn’t got, I’d recommend anyway) it can help to identify specific needs.
There are also state based health advocates that can support and assist your Mum with appointments. I know for myself some of the info can be a little overwhelming, I take my wife, what I miss, she remembers. She’s my advocate.

So there goes a bit of info for you. Please speak to Mum and let me know what she has to say.
Does she want an aged care assessment?
Does she have a Healthcare plan?
Does she want a health advocate?

Look, if she says ‘No’ or ‘Stop’ that’s fine, I respect that. I’m just sharing the knowledge I have and if it helps, all the better.

Merl from the Moderator Support Team

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Hey Shelley,
I’ve found a few links that may assist
The Australian Sjögren’s Syndrome Association https://www.sjogrens.org.au/
Australian Rheumatology Association https://rheumatology.org.au/
Melbourne Arthritis https://www.melbournearthritis.com.au/sjogrens-syndrome.html

Now, you may query why I’ve sent links for arthritis, but as both arthritis and Sjogrens are autoimmune conditions, some information aligns with both.

Hope it helps
Merl from the Moderator Support Team

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Hi Merl,

Sorry I don’t know why but I missed your mail from 05/10 so only have just read now, I have forwarded onto my mum today and will let you know her reply.
Being new to the website I just have a couple of other questions. Are these message private or do they take the form of public posts?
Also just watching the short video on how to create an account I have realised that I should not have used my real name as my username. Is there anyway that I can change this?
Many thanks
Shelley

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Hey Shelley,
No problem with missing msgs, often I don’t catch things either, so all good.
Messages posted on the boards, like this message are public, for all to see. But if you click on the avatar (in your case the orange ‘S’) a dropdown menu will appear. In the top right corner of the dropdown is a blue ‘Message’ button. If you click it a dialogue box will appear and this will send a PM (Private message), now I say ‘private’ but as mine is Modsupport the other members of the Modsupport team can also view this, but it is not a public post (I hope that makes sense).

As for changing you name, yes that can be done.
If you click on your avatar in the purple bar, this will drop down a menu.
At the top of that menu, on the left, is your name. Click on it.
This will bring up a menu page with Summary : Activity : Notifications : Messages : Invites : Badges : Preferences
Click on ‘Preferences’ this should show your account details. If it doesn’t click on ‘Account’
Here you will see “Username” and below that your name with a pencil.
Click on the pencil. This will bring up a ‘Change Username’ box.
Type in your preferred name and hit ‘Change’
And (Hopefully) you’ve changed your name. And if not, let me know and I can change it all for you.

I hope that all works :smile:
Merl from the Moderator Support Team

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Hi,

I have been in touch with Mum and she says that she already has a Health Care plan and doesn’t believe that she currently needs an aged care assessment as she has been told that this only for people that cannot do for themselves and she feels that she is still able to manage independently. She is aware of this option for the future. She didn’t mention the advocate but I have asked her again if this is something that she would be interested in and will wait till she gets back to me:)

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Excellent Shelley and, just quietly, that’s what I wanted to hear.
My wife is of the age where she could have an aged care plan, but you can bet that if I went down that line I’d be in the doghouse REAL quick. And the very last thing I want to do is remove what little independence people may have. If your Mum is aware of the options available, all good.
With some medicos they can switch off to patients and their concerns or talk in medical terms that are too advanced for the patient. A medical advocate is often someone with some medical knowledge and can talk to the dr’s on their level or has an understanding of the patients understanding and mindset. In my former employment I was an advocate for clients and even just as a support person it can be helpful just so the patient doesn’t feel so isolated.

I’m pleased you spoke to your Mum and its good to hear that she already has many of the bases covered. But if you feel either yourself or her need some assistance in finding info, accessing services or just for a general chat we are always here.

Merl from the Moderator Support Team

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Shelley, Welcome here. I’m Seenie, also from ModSupport. I’ve skimmed this thread, and I notice that there was a bit of confusion about whether your mum’s arthritis is rheumatoid or osteo. Because she appears to have a fair amount of auto -immune “stuff” going on, it’s important that her docs know which is which.

Has mum been diagnosed by a rheumatologist? If not, I’d be making plans to go in that direction. She will probably do the “I don’t want to make a fuss, and arthritis is arthritis, doesn’t matter what they call it, I’m just getting old” if she’s anything like my mother was. But if it is rheumatoid, a rheumatologist may be able to make her feel much better than she is feeling now. Please encourage her to get the best diagnosis and treatment that she can.

Your mother is a very lucky woman to have a daughter like you. OK, it would be easier if you could just pop over to see her, but you are doing the next best thing that you can do in this high tech world. And we are all lucky to have Ben’s Friends: everyone here is a volunteer with our own rare disease or condition. We know it’s hard, but we also know that by supporting each other, friends and families, we can improve the quality of life for others.

We’re glad that you found us!

Seenie

PS I’m not Kiwi or Aussie. I’m Canadian, eh?